hope springs eternal?

birthday girl

bloodlust

things that make you go hmmm...

i was supposed to go to cedars-sinai today, but i'm not strong enough to drive myself. my hands are really shaking and it's an hour's drive away. unfortunately, it seems par for the course now, after any trip, i have a period of "recovery". a two day migraine upon arriving in winnipeg last month, and now today, in bed for the second day after a few days in vegas/san diego. to be fair, i had been in bed for 5 days straight with a brutal cold before we left for vegas. i certainly wasn't 100% when we left.

but 100% has not been my percentage for some time now.

when i was in toronto last month, i saw dr. cardella who has been my nephrologist since BEFORE my transplant. we met when i was 18 years old. i was 3 months away from dialysis. i had just been transferred from "sick kids" (the hospital for sick children) and away from my beloved dr. balfe. bill balfe. bill balfe. i adored him. he managed to endear a frightened 13 year old to him through teasing queries over my obsessive use of hair products. (mousse WAS all the rage!) and suddenly, now "of age", i was at the toronto western, a very ADULT hospital, with a very ADULT doctor and a very ADULT health problem.

i preface this by heralding my utmost admiration for dr.cardella. he has given me phenomenal care and never treated me with anything less than total respect. but it has been a growing process for both of us. i had to become a proactive, engaged, infomed patient and he needed to humanize his massive intelligence. but on that first day, i think we were both trying.

as any well brought up danish-latvian-canadian hybrid young girl does, i had pulled myself together in my best 80's green paisley business suit, slapped on a coat or two of "cover girl" and sprayed my duran duran bangs within an inch of their life. my mother had accompanied me to my first meeting with the renowned cardella. to say i was nervous is an understatement. in part, because this was to be my new health venue, and in part, because i was becoming increasingly sicker. i wanted to be heard.

and so i told dr. cardella how i was feeling really tired. so tired. like sleeping 12 hours a night tired. and with a dismissive flick of his wrist and an invisible roll of his eyes, that only i managed to see, he proclaimed, "oh, all teenagers sleep until noon".

well.

the waterworks started. and once they started i could. not. shut. them. off.

god bless my mother, who stepped in and calmly started to explain that this was just not in henriette's nature. that henriette was a "winnah!", and a go-getter who usually slept 6 hours a night. how she managed to explain this with the background symphony of my sobbing and snorting and sniffles, i'll never know. needless to say, it was a pretty short meeting.

on the streetcar ride home, my mum turned to me and said, "you know, i think you look too good. next time don't wear any makeup". at the time, not wearing makeup, for me, was like, god, not using toilet paper. it simply wasn't done. and 22 years later, i get it, but i resent it.

a few months ago, i wrote about how frustrated i was with the change in my appearance. how prednisone gives me "moon face". now EVERY SINGLE TIME i see a photo of myself it's a reminder of the battle i am losing. there's a reason i haven't posted pictures on FB since april. one friend commented "if i have to read one more post about how you don't feel beautiful...". did that hurt my heart? yes. because it reinforced the disconnect. i suppose it was a backhanded compliment, that she thought i was beautiful, but the difference is for ME, any feeling of beauty comes from feeling healthy, headache free, strong in my body, clear of my mind, and i just never feel that way anymore.

(there has also been disturbing focus on my weight loss. that anyone views that as a positive is alarming to me. first of all, i didn't need to lose weight. and secondly, the reason i have, is because i am SICK. but i'm not going to analyze that here.)

and yes, i am going somewhere with this.

before i decided to reschedule with cedars, i was dressing in the bedroom listening to the morning news with a segment on breast cancer. before the tired diet and nutrition tips (yes! fruits and vegetables are loaded with antioxidants!), was a wonderful piece on "dressing the part". they claimed "if you look sick, you will feel sick". "YES!" i screamed at the television set. these breast cancer patients spoke of the jump in their self esteem when they made an effort with their hair, makeup and clothes. in no way am i minimizing how i know they suffer. i had a round of anti viral/chemotherapy drugs and it slayed me. i didn't do much else but lie there with an ice pack on my head for 4 days. i can't imagine months of it. but when these patients spoke about how seemingly superficial acts like "dressing up" became so significant to them, it resonated with me. 100%.

i used to be a gal loaded up with self-esteem; the afterglow of caffeine addicts guzzling of their morning brew. jacked up and ready to go. there is not one aspect of my life untouched by my compromised health. and that includes my self-esteem. so if i want to pull together that maybelline look, even if i'm only hitting the grocery store, try and stop me. but the compromise may be, that the disconnect will remain. that the omnipresent comment "well, you look great", will prevail. but maybe, that's ok.

maybe.

and so last month, my friend, m, eerily echoed my mum's words of 1987. "henny, you look too good. you need to wear no makeup and a fat suit". i love her for her ferocious protectiveness, but i will tell you, as i sat in dr. cardella's office, looking cute as a button, feeling about as energetic as a snail, i told him how tired, headache-y and nauseous i felt. and he told me, without an iota of patronization, that these were the symptoms i would feel at 10% kidney function. that this could go on for another 1-2 years. that in order to get on a list in canada, you must be on dialysis.

no flick of the wrist. no roll of the eye. not one sob, snort or sniffle.

we've come a long way, baby.

friendship

thank you, l. thank you, a m.

it's the little things...

there are some pictures that are worth a thousand words, and others that need a bit of explanation. back in 1992, i was a recent theatre school graduate, working at the shaw festival with gobs of enthusiasm and a healthy dash of 23 year old cynicism. one day, i flounced into rehearsal in one of my many floral print dresses that i had a fondness for.(thankfully, i have outgrown this prairie girl phase). fellow thespian wendy thatcher, the much admired, husky voiced talent remarked on my wardrobe. "why, henriette, don't you look lovely today". sighing heavily, i rolled my eyes heavenward and pronounced "i guess it's the little things". i have told this story countless times; if only wendy knew how significant, how poignant her words were to me. "you know what henriette, it really is the little things, because there aren't that many big things". there was no bitterness, no sadness, just pure generosity of spirit. and the wisdom that her pearls offered me.

and for the past 17 years that exchange has resonated like few others.

and so, i try every day, to find something to laugh at, a reason for a smile to tickle my lips. and if that means...photographing-my-husband-in-some-random-corner-of-a-holiday-inn-hotel-room-in-san-diego-that-seemingly-has-no-other-purpose...i'm going to do it. and i'm going to laugh. and i'm going to look at it again in the view finder. and i'm going to make him pose again. and we're going to laugh. 'cause all those little things, make one really BIG thing.

welcome to the pleasuredome

i'm a loser baby, so why don't you kill me...

the devil's work...

livin' on the edge

run neon tiger

the object of my affection

the new god

she sells sanctuary

a room with a view

thank you, jeff harris

shooting the shit...

when i was in toronto last month, my friend s introduced me to an interesting website. www.jeffharris.org. i believe this is the story. harris is a professional photographer who was documenting his life with one picture, every day. somewhere along the way he was diagnosed with bone cancer, and his photos took on a new and unexpected poignancy. i find his site compelling, so much so that it inspired me to do the same.

it's no secret that i have felt lost and unfocused for some time now. i am hoping this experiment will provide me with a creative outlet. i am certainly an amateur photographer, but my intentions are pure. i am trying not to think about what i shoot, rather, authentically respond to my day. how my body feels, what kind of mood I am in, what i had for breakfast, the state of the world...ya know. stuff like that.

but filling my creative void is not my only objective. i suppose my objective is also to reveal my underbelly. the every day henriette. the truth of my life. often sick, swollen and tired. naked of the hour-long hair and makeup regime, that i relish, that soothes, but deceivingly masks my reality. but maybe that's just a different reality. ah, but there i go again. doing what i just said i didn't want to do. getting in the way of myself.

so here we go. clean slate. empty palette. deep breath.

click.

mirror, mirror, on the wall...

Elousia

take 2 aspirin and call me in 3 weeks...

under pressure